Someone I love has the same dementia as Bruce Willis – this is what I’ve seen her go through

Yesterday brought the sad news that Bruce Willis has been diagnosed with frontotemporal dementia, and it’s a condition I’m more familiar with than most.

That’s because my nan also has a form of frontotemporal dementia (FTD), and has been living with it for around seven years. When Willis’s family first announced that he was retiring from acting last year due to a diagnosis of aphasia affecting his cognitive abilities, my initial thought was that his condition sounded similar to my nan’s – she has primary progressive non-fluent aphasia, one form of FTD. Now we have confirmation it is FTD after the actor’s family released an update on his condition.

Alzheimer’s disease is most people’s reference point for dementia. Sadly, many of us will have had a parent, grandparent or family friend with the condition – or have an awareness of a famous figure who has lived with it.

But it’s just one type of dementia. FTD is different but it’s also relatively uncommon, so people aren’t as familiar with the signs. Before my nan’s diagnosis, I’d only vaguely heard of primary progressive aphasia (PPA) because Terry Jones of Monty Python was diagnosed with it in 2015.

This kind of diagnosis can be just as devastating for the person with the dementia as it is for their loved ones. As maternal grandmothers so often are, my nan was my main caregiver, aside from my parents, growing up. It has been hard to adapt to the changing dynamics over the last few years.

Frontotemporal dementia affects the lobes at the front and sides of the brain. Some of the main symptoms can include language problems, personality and behaviour changes, and changes in cognitive ability.

There are three main types of FTD. There’s progressive non-fluent aphasia, semantic dementia, and behavioural variant frontotemporal dementia, which was previously known as Pick’s disease. They all manifest differently, and together account for almost a fifth of dementia cases.

Because of the prevalence of Alzheimer’s, people tend to associate dementia with memory loss. But with FTD, this will usually come later. In my nan’s case, her speech was affected first. So, she was still fully able to live independently without any need for extra care, still able to drive her car, go shopping, walk the dog – you name it. Her love for Paul McCartney, Jeremy Corbyn and Alex Ferguson remained.

But gradually her abilities to communicate became impaired. It’s easy to see why the mental health of people with FTD can be affected. You can become more self-conscious. Your confidence can plummet. You might also stay at home more in order to avoid communicating with others.

Even healthcare professionals and carers can be unfamiliar with FTD, and this can make getting a diagnosis more difficult. It also makes getting adequate care more tricky, as people just aren’t trained to work for people with these conditions. My nan has loved ones around her, but not all people are so lucky.

I don’t hold people’s lack of awareness against them – we can’t expect the public to know everything about every condition, of course – but it makes raising awareness all the more important.

This lack of knowledge can manifest itself in very unhelpful ways. I’ve even seen conspiracy theories on social media linking Willis’s condition to the Covid-19 vaccine. Fact-checkers can tell us that there is no proven link between the vaccines and aphasia.

The sad fact is, people will develop these conditions – it happens. “It’s just bad luck,” my nan was told at her diagnosis.

We often think of dementia as being an “old person” illness, but symptoms of FTD usually appear between the ages of 40 and 65. Willis is 67. My nan got diagnosed in her early sixties, before Covid-19 swept across the globe. She didn’t get a diagnosis until three years after her symptoms started.

It’s been a difficult few years for my family. Dealing with any type of dementia is devastating, and I wouldn’t want to pretend otherwise, but the lack of awareness around FTD has undoubtedly made the experience harder.

Fortunately, there are organisations such as Rare Dementia Support out there, and they do amazing work. But it’s not enough. We desperately need to raise more awareness of all dementias.